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Editorial
. 2020 Nov 16:5:270.
doi: 10.12688/wellcomeopenres.16351.1. eCollection 2020.

The ethics of data sharing and biobanking in health research

Susan Bull  1 , Niresh Bhagwandin  2
Affiliations
Editorial

The ethics of data sharing and biobanking in health research

Susan Bull et al. Wellcome Open Res. .

Abstract

The importance of data sharing and biobanking are increasingly being recognised in global health research. Such practices are perceived to have the potential to promote science by maximising the utility of data and samples. However, they also raise ethical challenges which can be exacerbated by existing disparities in power, infrastructure and capacity. The Global Forum on Bioethics in Research (GFBR) convened in Stellenbosch, South Africa in November 2018, to explore the ethics of data sharing and biobanking in health research. Ninety-five participants from 35 countries drew on case studies and their experiences with sharing in their discussion of issues relating to respecting research participants and communities, promoting equitable sharing, and international and national approaches to governing data sharing and biobanking. In this editorial we will briefly review insights relating to each of these three themes.

Keywords: Data sharing; LMIC; biobanking; ethics; global health; governance.

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Conflict of interest statement

No competing interests were disclosed.

References

    1. Bull S, Roberts N, Parker M: Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review. J Empir Res Hum Res Ethics. 2015;10(3):225–38. 10.1177/1556264615594767 - DOI - PMC - PubMed
    1. Kalkman S, Mostert M, Gerlinger C, et al. : Responsible data sharing in international health research: a systematic review of principles and norms. BMC Med Ethics. 2019;20(1):21. 10.1186/s12910-019-0359-9 - DOI - PMC - PubMed
    1. Global Forum on Bioethics in Research: Background paper: the ethics of data sharing and biobanking in health research. Global Forum on Bioethics in Research;2018. Reference Source
    1. Global Forum on Bioethics in Research: Meeting report: ethics of data sharing and biobanking in health research. Global Forum on Bioethics in Research;2019;27 Reference Source
    1. Bull S: Ensuring global equity in open research. Wellcome Trust;2016. 10.6084/m9.figshare.4055181 - DOI

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